Vulvar Vestibulitis Support Network

the chronicle of broken Vaginas, what we've done to try and fix them, and how we plan to save the World

Katie E’s Story September 11, 2007

My Story

I used to take Spinning class all the time. Then suddenly, after a year or so of going to class I started to experience a burning itch and by the end my crotch hurt so much I could barely stand it. So naturally, if my crotch hurts, everyone else’s must hurt too, right? So suck it up! And I could never wear tampons. They were uncomfortable. Tampon commercials always boast, “Now it doesn’t feel like a diaper anymore!” Yeah but it feels like a big metal rod lodged in between my legs. So naturally, everyone else must be crazy for wanting to wear them! Unbeknownst to me at the time there is a condition that affects millions of women, but that nobody seems to know about. I like to tell people, “My vagina is broken”.

Lots of times VVS can be caused by little ridiculous things like using scented soaps to wash up, or wearing non-cotton panties. Even drinking too much caffeine, STD’s, and cancer are on the list of possible reasons why you might be having problems under the hood. However after you run down the list, try some creams, and use a cookie cutter on your vagina to make sure you didn’t pick up something creepy from the toilet, its official. You have vulvar vestibulitis.

At first I thought it was just something I was doing wrong or wasn’t getting aroused enough. Plus, it was such a weird, awful feeling I thought it would be impossible to find an actual name for what I was feeling. It was too . . . esoteric to try and put into words. But after one night of sensual pain, I went on the internet to see what I could find. I sat at the computer for a while, at a loss for what to type in the search field. When you have a pain in your back, you type back pain. Or when you have a pain in your stomach you type stomach pain. So, skeptically, I typed “vaginal pain”. “Vulvodynia” began to appear in a lot of the web pages that came up. (Note: the more correct term is now vulvar vestivulitis. You will still see vulvodynia around, though.)

But there wasn’t a lot of information. I thought the possibility was high that this could be my answer to all my burning questions. And they were literally burning. After the pain started during sex and bike riding it cropped up in other situations, too. Of course these were usually public situations where it is not all that common to grab your crotch and craddle it. Sitting in class, standing in line for something, or hanging out with friends became common burn times. I eventually developed a subtle wiggle, where I could be sitting and look like I was moving to some rhythm in my head or on my headphones or being particularly happy. When really I was trying to relieve my vagina of the itching and burning in a nice, pleasant way, so as not to disturb or distract those around me.

I have been through the gamut of tests with two different doctors, and apparently nothing else was causing my pain. In fact, doctors aren’t really sure why vvs occurs, which is why treating it is just as fun as having all the tests to make sure you have it in the first place. Some gynecologists know more about it than others. Some specialize in it completely, though they are few and far between. The two that I have seen so far were very lovely ladies. However, they seemed more interested in making sure my pain wasn’t being caused by something else, than actually trying to treat me. I wanted to scream at them, “Well I’m glad we’ve pinpointed it girls, but now what? It still hurts!” I was finally diagnosed by a gyno that I went to just because my mom went to him. He delivered my brother. He said, “I can give you steroid cream or surgery. The surgery works 50/50 and you can only use the steroid cream for so long before it starts to errod the walls of your vulva.” That’s ok. I’m full, thanks. There were no vulva specialists anywhere near me, so I figured I was relagated to a life of pain. My pain never went away during sex, but I got to the point where I could try different things to where the good feelings outweighed the bad. During non-sex times, mine was a mild-moderate case. It popped up a little every day to remind me it was still there in case I forgot, which is so nice.

And then out of the blue, with no explanation, and no treatment, it went away. About two years after that first spinning class the pain went away. During sex, during bike rides, sitting down. It just stopped. I have no idea why. I have no idea if it will come back. I am constantly afraid of doing something that may trigger it again. I kind of have survivor’s guilt. Going back and reading some of the things I wrote in the midst of it, I can’t even remember what it was like anymore. To feel that every day. To have sex ending in intense pain, overflowing, snot-driven crying, and emotions heightened through sexual tension. Other women, my other NVVO women, are still experiencing pain everyday. I have been pain free for almost two years. I had started to forget. Then I had a scare about 6 months ago where I thought it might be coming back. It turned out to be an extremely minor yeast infection. But that’s what set me to thinking, millions of women still suffer from this and I cannot take that lying down. Even if it never comes back for me, I have to do something to help all of those who still feel that burning and itching. Who cannot have sex and cannot ride bikes. I plan to help save the world. One vagina at a time.

Update:

My husband and I are trying to have a baby, even though my VVS could come back. You can read about updates HERE.

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6 Responses to “Katie E’s Story”

  1. Sarah Says:

    Hi Katie

    I’ve had VV for three years now. When I was first diagnosed I hunted and hunted for stories of people getting better. I didn’t find many. Maybe women recover, move on with their lives and forget to tell us all that it will be ok. Perhaps few women get better. Either way, VV can be a lonely, painful and increasingly boring blight on life, so it was great to hear things have turned out for you. Thanks for all your good work.

    Sarah
    Oxford, UK

  2. brokenvee Says:

    Hi Katie,

    I’m extremely frustrated. My gyno thinks I have VVS because I cried at my first attempted pap smear. It felt like she was stabbing me in the vagina. She sent me to a physical therapist, who actually told me she couldn’t do anything for me because I wouldn’t let her put her finger in my vag. I’m 24, still a virgin, and the first time I tried to insert a tampon, it hurt, so I freaked and I never tried again. The thing is, I’m SCARED of penetration. My ex and I tried having sex about fifty billion times and he never got anywhere close to putting it in. I’m convinced I have vaginismus, but my doctors seem to discount that possibility. They’re not taking my phobia into consideration, they just think I have VVS and pelvic floor dysfunction. But I’ve never felt any of the pain you’re describing here. None of the constant burning. I only feel pain with attempted penetration. I’m supposed to go see a nurse practitioner at the Pelvic and Sexual Health Institute in Philadelphia soon, so hopefully she’ll give me some answers.

  3. Christina Says:

    Hi Kate,

    Thanks for your story. I’m curious about how your pain disappeared and you can’t link it to anything external that you were doing differently. I know that my own journey has been about learning about myself sexually, emotionally, spiritually etc and wonder if something shifted in your emotional world that may have impacted your healing, ie different partner, resolving historical issue….? All too often we are looking at our pain through the lens of the western medical model that tries to separate our physical selves from our emotional and spiritual selves. For example, we know that stress can cause headaches, indigestion etc…. Is it so crazy to think that other physical ailments are in part due to emotional factors? Why is this system so set on believing that our physical pain has only physical causes, and only physical cures? Answer to that question is because there is no money to be made in helping people to reconnect to their spiritual and emotional selves and access their own inner ability to heal. But there is money to be made from drugs and surgery. Don’t get me wrong, I still believe that the medical system has its place, but in my journey, it has served to discourage me and cause me to feel hopeless. It is only when I begun to access alternative healing practitioners that I found hope and was empowered to access my own ability to help heal myself. The journey continues….

  4. Katie E Says:

    Hey Christina,

    Thanks so much for your comments on our blog! I’m so happy to hear that you had success with the low oxalate diet.

    I really wasn’t doing anything to alieve my pain when it went away. Partially because I was then living in an area where there were no resources, western, alternative, or otherwise, except my OBGYN. If I had four hours I could explain my spiritual background, but succinctly I’m heavily spiritual and have been very interested in treating everything. In the beginning I did do some spiritual work. I guess you could potentially argue that maybe it decided to start working two years later. But since I wasn’t actively doing anything for a while before the pain went away, I don’t think it was a factor. All other factors in my life were constant. My boyfriend (now husband), job, family, stress levels. These all stayed the same. Obviously something changed, but at the moment I haven’t been able to pinpoint it. And I’ve been looking! Because I want to stay pain free. I’ve done some psychotherapy work and other spiritual work, and haven’t uncovered anything so far. I wish I did know, because maybe it would help me key into why my pain started in the first place and I could be sure not to do that so it wouldn’t come back.

    I’m glad that you are holistic yourself. You’re right that most people aren’t. And if it can’t be solved with a pill, they don’t want to have to inconvenience themselves with making lifestyle changes that could make such a huge difference in their lives.

    I hope that your journey continues to go well.

    Be well,
    Katie

  5. Susan Says:

    Katie,
    I am so glad to hear of your VVS going away. That’s amazing. I’ve not read that before now. It does give me some hope….which I feel I need, because even my dr. doesn’t provide hope.
    I am 45yrs. old and had to have a hysterectomy 2 months ago. My uterus would not stop bleeding. I was so looking forward to not having a period, but have not gotten to enjoy that aspect as I seem to have developed VVS. I am quite new to this and am still trying to figure things out. However, I did get put on estrace cream right away and just started using a cream to dull the pain. I mostly deal with irritation(redness and feels like I have a tampon in sideways), burning, itching and more irritation and pain following sex. I also have a bladder situation which might be IC. It’s not been diagnosed yet as I am waiting to see a specialist. I am taking enablex to get through the day as I otherwise feel like I have to go to the bathroom every 1-2 minutes. I truly feel that was brought on by a catheter that was left in me way too long. At the hospital my catheter was not emptying and it was painful. I asked to have it removed, but they left it in until the following morning. I had to have the nurse milk it all night to get any urine out of my body. Now, I cannot fully empty my bladder and it makes me feel extreme urgency.
    This has been so very frustrating to me. The whole darn thing! And to think, I might have to deal with it until my dying day. Ugh! I am currently looking for a better set of doctors who know something about VVS or atleast have a bit more compassion than my current doctor. I also was looking for a support group in my area(Tulsa, OK), but could not find one.

    Thanks for your website. It helps a bit just knowing I’m not alone.

  6. Karen Says:

    Hi Katie,

    I, too, was an avid ‘spinner’ and bike rider. I am also a potter who was spending long hours sitting on a stool, kicking a potter’s wheel. My symptoms began while riding my bike home from work one night and quickly spiraled from the sensation of a bad UTI to VERY painful vaginal burning. I was ultimately diagnosed with Pudendal Neuralgia. Like you, I have vivid memories of desperation and snotty tears and fear and pain.

    It’s been two years as of May 11, 2012. I’ve done a lot of doctoring, been on various meds, had PT, bought a standing potter’s wheel, stopped biking (now I’ve started back up), started swimming and yoga. I am now much, much better. I’m no longer on meds (other than some Estrace cream, which I have decided I like:), have started biking again, and can sit without much problem.

    Like you, I am terrified that it may come back. I am wondering if there are others like us, who’s symptoms disappeared? Mine sort of slowly faded away, rather than just ‘disappearing.’ I didn’t have much confidence in the Pudendal Neuralgia diagnosis at first, but I am now starting to wonder if maybe I really had compressed a nerve – and that it is healing? I am wondering if you have any information about the likelihood of symptoms going away, and also the likelihood of them returning?

    Thank you for your inspiring story, and for this wonderful blog ~


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